rare diseases

A close-up view of a jigsaw puzzle with a missing piece

Survey: Many rare disease patients struggle to navigate care

Ninety percent of patients and caregivers feel personally responsible for pushing to receive personalized care, and most lack a dedicated coordinator.

Anastassia Gliadkovskaya Feb 25, 2026 11:47am

A ballpoint pen rests on top of a stack of documents ready for signing

Fierce Biotech

Senate bill aims to keep NIH, CDC funds intact

Aug 4, 2025 11:30am

OMNY's data platform now represents close to 30% of the nation

Jul 31, 2025 4:30pm

AWS commits $10M to pediatric rare disease research

Jun 26, 2024 11:00am

Elsevier launches campaign to spread awareness of rare diseases

Mar 8, 2023 10:35am

Children's Mercy KC unveils advanced genomics system

Oct 12, 2022 12:00pm